Topical Steroid Withdrawal: The First Year

photo of empty road in between grass field during golden hour

I have been going through topical steroid withdrawal flare-ups for over 2 years now. This post is the first 18 weeks of my written journal, and pictures of the first year. I stopped writing in my journal due to depression and anxiety.

If you do not know what topical steroid withdrawal is it is the process many people go through after stopping steroid cream. The face becomes red, inflamed, cracking, oozing, bleeding, and starts looking like lizard/elephant skin. It is painful and it is a long-drawn-out process.

If you have a weak stomach and find it hard to look at disturbing pictures I would suggest you not read this post as there are graphic images of the process I am going through.

If you would like to follow my Instagram page and see more pictures my user name is https://www.instagram.com/tsw_crystal_grasso/ Please note that I do not use filters for my face and yes my eyebrows are horrible. My hormones went crazy after stopping the steroid cream and my hair grew extremely fast. Due to pain I just leave it alone. This is not a pleasing account to look at, but it can help those who are going through Topical Steroid Withdrawal understand what happens and what it looks like. Please keep negative comments to yourself.

The first week

Days 1-4 there were no real signs of anything wrong with my face. However, by the 5th-day came around I started to get bright red patches on my cheeks that were hot to the touch. It didn’t itch too bad at this point. Day 6 spread even more and my face began to get a little tingly and it burned a little. Day 7 and I became itchy, swollen, and burning. I was straight-up not having a good time. 

The second week

On day 8 I could not open my left eye when I first woke up. My lips were also swollen. The itch was so bad I began having insomnia. By day 9 I began oozing and cracking. My skin looked a lot like a lizard. On day 10 I did my first face scrub with warm water and a soft rag. It bled, burned, and tightened up so bad after about an hour of scrubbing the dead skin off my face. Day 10 was a good day. My face still burned and was bumpy but it was not swollen too bad. On day 12 I woke up swollen again and the lizard skin started coming back again. On day 13 I began peeling like crazy which would also cause the itch to intensify. Day 14 and I have not gone to sleep because of the pain. I somehow managed to get dead skin in my eye, which burns like crazy. My eyes are dried out. My hair keeps falling out little by little.

The Third Week

By the third week, I started losing the edges of my hairline. I became super depressed. I was not able to sleep much due to the insane amount of itching and burning my face was going through. The face flakes got worse and I had to clean them up often. However, the pain did lessen. Though I am unsure if that was because I adapted to the pain or if it was because I was healing. My eyes started swelling and messing with my contacts, so I had to go back to glasses for the time being. My hormones were up and I began to grow a beard…. and man was my beard weird. I def needed to grab some clippers haha.

The Fourth Week

It actually started clearing up… for like a day and then it flared again. I went through so many mixed emotions this week that I felt like I was on an emotional roller coaster. I wasn’t peeling as bad but the redness was getting worse and worse. Except for one day when it was completely clear. Though that was short-lived and the next day my face was flared once more. This process sucks.

The Fifth Week

This week was a little better. My husband got me some flowers to help me feel a little better. The burning and itchy patches are almost gone. I hope it continues to progress.

The Sixth Week

We saved a baby goose and I made the mistake of giving it water and it ended up passing away a few days after we saved it. My depression is horrible so I turned to comfort food… not the best idea. My face is flared up and burning once more. I’m more tired than normal and my mental state of mind is up and down. I keep having hope and then none. Sorry to be so dull this week. It’s been a rough one for sure.

No pictures this week, though there may be pictures on my Instagram account. https://www.instagram.com/tsw_crystal_grasso/

The Seventh Week

This week has been strange, my eyes have decided to go from brown, to blue, to green, to all colors, and even one eye is different from the other. I found out I have central Heterochromia. An eye condition where your eyes are more than one color. Due to my constantly changing they can be any color depending on how I am feeling both mentally and physically. I also tried swimming which made my face 10 times worse. These ups and downs, strange reactions, and pain are a nightmare. One I hope to wake up from soon. I hate this, but I will continue to document this journey.

The Eighth Week

I helped my husband get the backyard set up, so we could spend time outside more. It felt amazing being out in the sun. My face did sting a little, but it was worth it. My mental state is a lot better now and going outside just to read for a little bit has dramatically improved my mood. My little one loves playing in the dirt, he’s more than happy to go outside with mom. However, the TSW did spread to my elbow. It only stayed a few days and went away after. This week has been a good one.

The Ninth Week

I went swimming and my face flare up really bad, but I expected it to this time. I’m realizing keeping my mental health balanced is more important than worrying about a flare-up. Picking myself up more and more. The TSW came back on my elbow and hasn’t gone away yet. Hopefully, it will soon.

The Tenth Week

I’ve slowed down with taking pictures every day, the days are usually the same. Some days it’s not that bad and others are just plain awful. I’ve been researching this topic more and more. I also started having anemic attacks where I become so cold I am in pain. I have no idea if this is due to the TSW or something completely different. I’m kind of afraid to go to the doctor due to COVID…

The Eleventh Week

I had a horrible flare-up. My face broke out and started burning. I hit a huge depressive episode and don’t have much want to update too much. This sucks. I don’t think I will ever trust a doctor again.

The Twelfth Week

I am still going through the same depression as last week. Though I keep trying to pull myself out of it by smiling and trying to do self-care things. It’s just a bit harder. I can feel myself starting to pull out of depression, it’s just a bit harder to do most things right now. At this point, it is more of a mental battle than it is a physical one. Anyone who is going through this that stumbles across this post, please keep going and getting through this. Make sure you take extra care of your mental wellbeing. I believe this is my own biggest battle when it comes to TSW. I feel so ugly and in pain. Luckily my husband keeps reminding me this is temporary and lets me know he believes I am beautiful… flaky and all lol.

No pictures this week, though there may be some on my Instagram account. https://www.instagram.com/tsw_crystal_grasso/

The Thirteenth Week

My eyes started doing that weird changing color thing again. One eye is blue and the other is green. I think it’s pretty neat. Apparently, my eyes have always done this, I just did not notice it until I started taking daily photos of myself to track my TSW journey. One thing I’ve noticed going through all this is there were a lot of things I did not know about myself. It’s almost like I am discovering myself in a new way. Feeling better about this whole TSW thing, even though it is still a pain to go through…. literally.

The Fourteenth Week

I actually put on a tiny bit of makeup this week and did my eyebrows! I have not had makeup on for months, it felt weird, ha-ha. Though it did break me out a little bit. My husband bought me an Aloe plant, so I extracted the gel and put it on my face. It felt AMAZING.

We also celebrated the fourth of July with a cookout. I added meat back to my diet (occasionally due to physical reasons), and ate some chicken and grilled veggies. My face did break out, but man was it worth it being in the sun with the family.